Our doctors are useless. We have 9 specialists for a list of things and it seems like we don't find out about anything until it's past time to do anythign about it.

Weight has been an issue for Carrie since the week after she was born. She lost more then she was suppsoed to, she has such a light appetite that there were MONTHS that I could only get 6oz into her a day. They told me at her 9 mo appt that "someone" should have had us altering her formula to get more calories. We're just starting to work on her lack of sucking reflex (finally got someone to listen to us about her needing the therepy). Now we're trying to get 1200 cals a day into a child who can't swallow (cause of her sucking relfex and sppech therepy). GRRR So basically no one said anythign about it, though there were many chances to have said something. Now they're panicking it's an urgent need. Nutritionalists, speech therepy, GI specialists, special diets... etc. GRRR

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"Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live."